In conversation with Ana – mum to Maia and Sara.
In 2014, Ana and her husband, Alex, received the exciting news that they were expecting identical twins. But just 15 weeks into the pregnancy, the doctors discovered a complication—Ana was diagnosed with twin-to-twin transfusion syndrome (TTTS), a rare condition affecting identical twins. The imbalance in blood exchange meant that baby Sara was receiving more nourishment, while baby Maia was at risk.
“I was told I might give birth prematurely, but no one knew for sure,” Ana recalls. “The doctors gave us survival percentages – Sara had a 75% chance, but for Maia, it was just 45%. Even if she survived, they couldn’t predict what her future would look like. I was lucky – this March the twins will be turning 10.”
Maia’s Diagnosis
In 2016, Maia was diagnosed with bilateral spastic cerebral palsy (CP), affecting her right side more severely. She is also non-verbal. For Ana, navigating the medical system in a second language proved challenging. “Even though I speak English fluently, understanding medical terms was difficult,” she explains. “I had a much clearer understanding of Maia’s condition when I took her scans to Romania, where a doctor explained everything in my native language. I can only imagine how hard it must be for parents who don’t speak English fluently.”
Despite the challenges, Maia’s spirit shines through. “She is always smiling, even during hospital visits,” Ana says.
Maia’s everyday life
Maia and Sara share an inseparable bond – one that only twins can truly understand. “Sara is an amazing sister,” Ana says. “She helps Maia with daily tasks like brushing her hair and getting dressed when I’m busy. They have a magical connection.”
At school, Maia thrives. She loves learning, playing with friends, and engaging in therapy sessions. “She does speech and language therapy, occupational therapy, and physical therapy. But what she loves most is hydrotherapy in the pool, horse riding, and trampoline rebound therapy every Friday, and meeting Toby – the school therapy dog.”
At home, Maia’s love for the cartoon character Bluey is unmatched. “All her toys are named Bluey,” Ana laughs. “Maia is not a picky eater but if there’s chocolate, Maia is the happiest child in the world!”
Challenges and Hopes for the Future
Maia uses a wheelchair, a walking frame, and a stick, all provided by government support. “We’ve been lucky,” Ana acknowledges. “Sometimes there are delays, but we do get the equipment she needs.” However, she worries about the future. “It’s unfair that support stops when you turn 18. CP doesn’t go away—there’s no cure. Just because your passport says you’re an adult doesn’t mean your needs suddenly change.”
Her advice to other parents of children with CP? “Stay strong. There are charities and people who can help – you are not alone.”
As for Maia’s future, Ana has big dreams. “She’s a bright, clever girl. I just want her to have an independent life. She could even be a model – she loves posing for photos and always has a smile ready for the camera!”